Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hi Charlotte.. I was told that our son's PMG was caused by CMV as well. He'll be 9 years old next month. We had taken him to see Doctor Dobyns in Chicago when he was 4..and based on the ct scans and his general condition they felt it was the most likely cause. 's brain is affected alittle more than 80%... he is non verbal, in a wheel chair, g tube fed only now (this is only the past year and half)..and we have a battle with seizures and reflux. His personality??? He is delightful.. with the most beautiful eyes and smile.. he brings out the best in us all. We live in Connecticut.. and I would be happy to talk to you. Send me your private email and we can connect. Sincerely, Hasselberger (Mom to , (10) and (5)) charlotte wrote: Hi all just wondered if anyone has found that the cause of PMG in their child is CMV infection?I have found out today that this is a strong possibilty in my daughters case and would really like to chat to anyone who knows anything about this thankyou charlotte mum to melissa age 6 Ann Hasselberger District Leader Primerica Financial Services 1 (203)788-9602 jhasselberger@... www.primerica.com www.citigroup.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Charlotte, That is true, PMG can result from CMV,or herpes, rubella, and toxoplasmosis. I was also told that my daughter developed it because of CMV. Because CMV is a-symptomatic it is quite possible you had it and never knew it. I was relieved when that was the conclusion for Savannah until her TITERS blood work came back and it was negative for all of the ones listed above. If your doctors think that CMV is the cause, this can be checked by a simple blood test. Hope this helps. Keasha > > Hi all just wondered if anyone has found that the cause of PMG in > their child is CMV infection?I have found out today that this is a > strong possibilty in my daughters case and would really like to chat > to anyone who knows anything about this thankyou charlotte mum to > melissa age 6 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 This was ruled out as being the cause for my daughters pmg (at the age of 5) by a blood test on blood obtained from her Guthrie card, a blood sample taken at birth and stored somewhere: this is done on all new borns as I understand it, here in the UK anyway. Maybe you can request this test is done. Dom Cause of PMG Hi all just wondered if anyone has found that the cause of PMG in their child is CMV infection?I have found out today that this is a strong possibilty in my daughters case and would really like to chat to anyone who knows anything about this thankyou charlotte mum to melissa age 6 ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.13/500 - Release Date: 26/10/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Thanks for the replies im having my daughters heel prick blood test looked at to see if she had the infection then as it is showing in a recent blood test,kind of hoping that it shows her PMG is caused by this so i will at last have a cause charlotte charlotte wrote: Hi all just wondered if anyone has found that the cause of PMG in their child is CMV infection?I have found out today that this is a strong possibilty in my daughters case and would really like to chat to anyone who knows anything about this thankyou charlotte mum to melissa age 6 Send instant messages to your online friends http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 I'm sorry but what does CMV stand for?? My son has PMG and we're still learning bout everything. _____ From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of charlotte Sent: Wednesday, October 25, 2006 12:38 PM To: polymicrogyria Subject: Cause of PMG Hi all just wondered if anyone has found that the cause of PMG in their child is CMV infection?I have found out today that this is a strong possibilty in my daughters case and would really like to chat to anyone who knows anything about this thankyou charlotte mum to melissa age 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 , It stands for cytomeglavirus. I sure hope I spelled that right. Keasha > > I'm sorry but what does CMV stand for?? > > > > My son has PMG and we're still learning bout everything. > > > > _____ > > From: polymicrogyria [mailto:polymicrogyria ] > On Behalf Of charlotte > Sent: Wednesday, October 25, 2006 12:38 PM > To: polymicrogyria > Subject: Cause of PMG > > > > Hi all just wondered if anyone has found that the cause of PMG in > their child is CMV infection?I have found out today that this is a > strong possibilty in my daughters case and would really like to chat > to anyone who knows anything about this thankyou charlotte mum to > melissa age 6 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Thank you. And does anyone know what the test name is for getting it tested _____ From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of lakeasha_w Sent: Thursday, October 26, 2006 6:52 PM To: polymicrogyria Subject: Re: Cause of PMG , It stands for cytomeglavirus. I sure hope I spelled that right. Keasha > > I'm sorry but what does CMV stand for?? > > > > My son has PMG and we're still learning bout everything. > > > > _____ > > From: polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com> yahoogroups.com [mailto:polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com> yahoogroups.com] > On Behalf Of charlotte > Sent: Wednesday, October 25, 2006 12:38 PM > To: polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com> yahoogroups.com > Subject: Cause of PMG > > > > Hi all just wondered if anyone has found that the cause of PMG in > their child is CMV infection?I have found out today that this is a > strong possibilty in my daughters case and would really like to chat > to anyone who knows anything about this thankyou charlotte mum to > melissa age 6 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Tell them to have you tested for TORCH to see if the immunity to the Titers. Keasha > > > > I'm sorry but what does CMV stand for?? > > > > > > > > My son has PMG and we're still learning bout everything. > > > > > > > > _____ > > > > From: polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com> > yahoogroups.com > [mailto:polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com> > yahoogroups.com] > > On Behalf Of charlotte > > Sent: Wednesday, October 25, 2006 12:38 PM > > To: polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com> > yahoogroups.com > > Subject: Cause of PMG > > > > > > > > Hi all just wondered if anyone has found that the cause of PMG in > > their child is CMV infection?I have found out today that this is a > > strong possibilty in my daughters case and would really like to chat > > to anyone who knows anything about this thankyou charlotte mum to > > melissa age 6 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 has Bilateral Fronto-Parietal PMG and we found out at the 2005 Liss get-together that it was caused by the CMV virus. We saw Dr Chang from the Walsh lab and Dr Dobyns and they both agreed with a 95% certainty that the cause of 's PMG is CMV. They They said it is too late for a blood test at this point as the result would be unreliable. They pointed out calcifications in his frontal lobe and the pattern of the gyri in his brain that lead them to this conclusion. They were so certain that they released us from their respective studies, as they are studying the genetic causes of PMG and Liss, and we do not fit the criteria. So, we have accepted that CMV is the culprit, not that it changes anything. I guess it would be comforting if we were planning on more children, but that ship has sailed. It will be a relief to feel that my daughter will not have to worry when she has children of her own. I think it actually made me angrier that a virus did this to my child. A virus that I had no prior knowledge of, or heard any warnings about at any time during my pregnancy, and I am a nurse! Most of the nurses I know had never heard of CMV before came along. The only one of my RN friends that knew anything about it had worked in a pediatric facility prior to working for my employer. If CMV can have such devastating consequences on an unborn child, why are most people in the dark? Maybe there is some kind of public education or political lobbying that needs to be done to bring awareness to our plight. Sue Mom to Meghan (10), and (5) BFPP, mod spastic quad CP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 Just like Torin, our (who is now 9) was damaged due to CMV in utero. Interestingly, had severe hearing loss from about age 9 months through about age 2 1/2.. he had hearing aides, etc. and as time went by we took him to the American School for The Deaf where they did significant testing designed for disabled children. He now has absolutely no hearing loss... we think it was more his inability to react to sound, than his inability to hear. But the audiologist and doctors were sure that he had profound and severe hearing loss. We recommend seeking out an audiologist who deals with disabled, or neurologically impaired children, because they had a completely different testing process. From the age of 1 year old to about age 4 we really uncovered so much about what he had, and was dealing with. That is just what happened to ....I still have the hearing aides in his baby book...and it is so strange...because the first audiologist clearly diagnosed severe hearing loss. Anyways, amidst 's other many problems, we were blessed that he could actually hear... Best of luck with Torin... Sincerely, (Mom to age 9) kimandkobi wrote: We have had the results for our little man. Torin was damaged by CyroMegeloVirus in utero. They proved this by going back to his day2 heel prick blood test. He is comming on though. He has sever hearing loss and it appears to be progressive. Upper limb weakness and a bit of reflux. He is now 11mths. He can sit but is a bit unstable. He loves to stand and walk holding hands but his balance is still not there. He ha sfound he can roll anywhere he wants and so has given up on commando crawling, much to the physio's annoyance. He is a happy fun loving little fellow who will have to work to over come his difficulties, the main problem with that is he is a very contented laid back fellow. Grandma Carol, Torin 11mths with still to be confirmed PMG problems. " Our beliefs about what we are, and what we can be precisely determine what we will be. " - Robbins " Happiness is a conscious choice, not an automatic response. " - Mildred Barthel Quote Link to comment Share on other sites More sharing options...
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